October 16, 2015 at 9:57 am #903RubyParticipant
First of all, how are you? Please help me to find an answer for my questions.
At the age of two I was diagnosed with exercise-induced asthma when I had my first pneumonia. During the winter time I always caught a flew, got bronchitis or a cold, but with the medications it was manageable and everything seemed pretty normal. After turning 4 years old I first dislocated my elbow when my grandma tried to grab my arm. Around that time my elbow caused a lot of pain, but fortunately it became better when I got older. My life was pretty ordinary no pain at all just my elbow that was sometimes popping out, but nothing serious.
When I got into high school I started to have a lot of problems, I was often ill…Had to learn and repeat all the stuff that the other kids learned in school…
And then I started to have a lot more episodes of bronchitis than I used to have and I probably had about 4 pneumonia within 1 year.No medications were able to stop me from getting ill. We went from doctor to doctor, did tests (on the heart and lungs…) no one had any clue or could help us. ( ironic : mum is a doctor)
Then I was diagnosed with scoliosis (about 25-30*). By that time the doctors told us that I had very hyper flexible joints and the word marfan was first mentioned because of my medical background, but after 10 min discussion “ruled out” (no tests at all)
I didn’t know what to say , I had multiple lung infections without any reason and now scoliosis… So I started to search on the internet. I watched every documentary I could find about rare diseases that could cause my major lung problems without any success. So I made a list of all my symptoms which kind of brought me here:
-arm span is actually longer than body height
-hyper flexible joints and really really stretchy skin ( all around the body)
-pain in joints
-I can rub parts of my fingernails away when they’re wet.
-I see those white lines or it looks a bit like a spider net (idk)
-after a lung test the nurse told me I had lungs like a diver, because the tests didn’t show any abnormalities even though I was ill (are the lungs also affected in ehlers-danlos-syndrome?strechty lung tissue?)
-dislocations on my elbow, I can let every joint in my body pop
-my mum has flexible joints and skin too
Is there a possibility of me having ehlers-danlos-syndrome ? hypermobilitysyndrome or ehlers- danlos-syndrome or none of them?
Especially the lung problems could they be linked to ehlers-danlos?
Thank you for reading my post, I appreciate every answer of you!
PS: don’t mind any English grammar mistakes, I’m not from the US and still in school. 🙂November 19, 2015 at 9:20 pm #5706jlreedParticipant
I am by no means an expert on all of this,but I do recall reading several articles about chronic lung issues being connected to EDS. They caught my attention because my son has had issues with his lungs since he was a baby. I do apologize that I can’t find the particular article,but I did find this website. http://www.ehlers-danlos.org/about-eds/medical-information/lungs-and-eds/
I hope this helps some and wishing you the best of luck in you journey!December 5, 2015 at 5:59 pm #5738RubyParticipant
Thank you jlreed,
for this piece of Information!
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